Adventures in Big Bird's Liver World

Guest Post-David Haas

2011-10-28T10:32:00.000-05:00

I was contacted earlier this week about a guest post written by David Haas. He is passionate about caregivers, cancer fighters and survivors. Since Big Bird and I watched first hand cancer still our Dad away and take the lives of my Aunt Karen (lung cancer) and my Great Aunt Sandy (breast cancer)-I am grateful for people who are "cheerleaders" for caregivers in any respect.

I am excited to share his post on how exercise can improve the lives of those fighting such crippling diseases.

You can learn more about David here.

Exercise Improves Life in All Phases of the Cancer Fight

By: David Haas

Whether you are newly diagnosed, already undergoing treatment or surviving cancer, there have surely been times where you felt like all the fight has already been drained from you. The last thing you could imagine doing is reaching for your last bit of strength to maintain your level of fitness or get a bit of exercise. Research shows, however, that the benefits and payoff of doing just that make it worth the mental and physical effort with rewards that can help save your life.

In fact, in June 2010, the National Cancer Institute released a bulletin entitled "Guidelines Urge Exercise for Cancer Patients, Survivors." This bulletin explains what is currently understood about the benefits of exercise and fitness during cancer treatment and recovery, and what future avenues can be explored with further research.

It had already been determined by clinicians at the University of Pennsylvania that weight lifting and other resistance-type exercise reduced the incidence of lymphedema in breast cancer survivors. Published in the "New England Journal of Medicine" in 2009, this study explained that exercise helps, rather than exacerbates this painful and potentially dangerous swelling of the arms.

The more recent information stresses to doctors and patients that cancer patients at all stages of disease and recovery should be urged to stay or become active. It seems that, in addition to the specific benefit of reduced lymphedema for breast cancer patients and survivors, overall quantity and quality of life may be improved in many types of cancer. They point out, though, that further analysis is required to determine the extent to which progression-free and overall survival are affected. What is known is the positive effect on quality of life. During and after treatment, body image becomes a factor leading to reduced quality of life, and perhaps depression. Exercise significantly improved this variable. Another major benefit addresses changes in body composition. Whether treatments lead to muscle wasting and weakness or weight gain and fat deposition, exercise helps to fight these changes.

The researchers point out that the evidence only supports specific recommendations for breast, colorectal, gynecologic, prostate and blood-based cancers at this point. This is not because exercise will not benefit patients with other types of cancer. It only means that current studies have not included enough data on them to this point. Obviously, recommendations will vary by type of cancer. For example, if surgery has weakened an area of the body, that factor needs to be considered. The same exercises may not have the same benefits for patients who have breast cancer versus someone with lung cancer, mesothelioma, bone cancer and so on.

One of the most important things to come from this study, researcher hope, is to encourage activity and to stress to doctors that cancer patients can, and should, exercise. Patients, oncologists and trainers will hopefully adopt these new recommendations to help cancer patients maximize the quality and perhaps even the quantity of their lives

Holy Moly

2010-11-10T16:50:00.002-06:00

No updates in over a year! So sorry!

We lost our father to cancer last December. We were fortunate enough to fulfill his wishes and spread his ashes in the beautiful Red Fish Lake area of Idaho in August.

Big Bird is doing well liver wise. Having some kidney number concerns-but since he broke his arm last month take a dive down his stair case-they are holding off and trying Rapamune again. I am not thrilled with this choice...so I think I may attend my first clinic appointment in a year with him on his next trip.

Big Bird is a healthy weight and looks remarkably better...I can hardly believe he is approaching his 3rd year (or re-birthday as called in transplant circles) next month.

All is good

2009-10-13T10:59:00.002-05:00

I have updated in awhile...I guess you could say that is a good thing! All is well in Big Bird's world! Medically speaking anyways. Blood work is good, health is good, liver is good!

On antoher note, I am volunteering for the MDA Lock-Up this year. I am scheduled to be arressted on November 5. Please help me raise my "bail". You can donate online here. I know it is a step away from the liver programs that are dear to my heart-but still a worthy cause.

We are still struggling with out father's cancer. He has stage IV lung cancer with mets to several areas in his body-including the brain. This is just another challange we get to deal with.

FDA Alert

2009-06-12T12:18:00.002-05:00

My trusty Yahoo PSC group set in the latest FDA alert. It just happens to be on Rapamune. The anti-rejection medication they had switched Big Bird to back in February. Apparently it has caused issues in kidney patients that were switched from some other anti-rejection to Rapamune.

If you are taking another anti-rejection medication and your doctors want to switch you, PLEASE question them until all your concerns are answered.

You can read the full FDA alert here.

Good News....sad news

2009-06-08T14:52:00.002-05:00

Big Bird is getting better. He seems to be responding well to the drug therapy. His blood works has shown improvement each week and the jaundice is going away. He goes back in 2 weeks for more blood work. The transplant team is hopeful that the damage caused to the liver during this rejection will repair itself, but only time will tell us.

On Friday, June 5, I got a phone call my our dad. I realize we have had a very strained relationship with him for several years. But he is still our father. He called to let me know that the doctors have diagnosed him with lung cancer. My aunt, his sister died from lung cancer just 1.5 years ago. I'm still reeling from this news. He was going to see the specialist today and is suppose to call when he has some more news to report.

We learned a new phrase....

2009-05-19T11:55:00.008-05:00

So, Big Bird calls me, Monday morning at work, home nurse called clinic, she wasn't comfortable with his symptoms of the Vancomycin treatment. So clinic said-you need to come (wtf??? I so was not prepared for an impromptu trip to SA). But, what does Big Bird do on this 2 hour car ride??? SLEEP...butthead is all I can say!

They run the normal myriad of blood work, chest xray. blah blah blah..... And why yes, that is a lovely shade of YELLOW he is sporting. They say it will stay for 6 months to a year and his bili will go up and down this whole time. Yesterday, his bili was at 17. I asked about the LFT, AST etc., but we all got distracted. She did however say there was some minor improvement.

His lovely pic line for the Vancomycin treatments he has to get at home. Hopefully when we go back to clinic on Friday (yes, for the second time this week) they will take the pic line out. That is gonna make for come completely grotesque and awesome pictures.

It stings a wee bit when they change the dressings. He took it like a trooper. Of course, I encouraged them to go ahead and be mean. ....but they like him there?

Yeah...we were not admitted yesterday! We were very happy. It seems it's a crap shoot whether he gets admitted every time he goes these days. They did say, that this was probably an unnecessary visit, but when it comes to "Mystery" boy, they are being overly cautious.

So, the new phrase you ask, well it is DUCTOPENIC REJECTION. He has chronic rejection, but the rejection is starting/stemming from his bile ducts. I found an article here you can go and read if your interested.

So until next time, this was a day in the life of Big Bird.... I leave you with this bumper sticker as sighted on the way to clinic! It just struck me as funny since I keep asking Heavenly Father why he thinks I have the strength to go through all this on to of dealing with my poor Aukee baby.

And the answer is????.....

2009-05-14T09:00:00.002-05:00

Yesterday we got the biopsy results back- Chronic Rejection.

Isn't that a delightful diagnosis to be given???

So, I hop over to the web and find this definition on medscape.com:

"Compared with other vasculzrized organ grafts, chronic liver allograft rejection is uncommon, most likely due to the unique immunologic properties of the liver allograft, the regenerative capacity of the liver, and better recognition and control of acute rejection. The incidence is approximately 1 % to 3%."

Whole article can be found here.

Are you kidding me, 1-3% chance of getting this. Lets hit the home run in rareness yet again...the rare liver disease wasn't enough...let's get more ambiguous with rejection.

The plan is to treat him out patient with immunosuppresent cocktail and hope the rejection will reverse or correct itself. This can take 6 months to 1 year.

I have no idea where this road will lead. I really had thought this journey was over.

So, the plan is to get Big Bird out of hawk and treat at home. At least he has his own place ;-)

Back to square one!

2009-05-13T12:59:00.003-05:00

After 6 Thymogobulin treatments, we are back to square one. He is not responding to treatments. They readmitted him on Monday, May 11. Another biopsy was had yesterday and we are awaiting the results.

After some blood cultures, an infection was found in his port line. So, they removed the port line and have been dispuring large amounts of IV antibiotics to clear up the infection.

Where o' where do we go from here???

I just pray that they are able to reverse the rejection.

One the road to recovery?

2009-05-04T09:58:00.003-05:00

On Sunday, Big Bird was released. After a second liver biopsy, it was determined that he was in full blown liver rejection.

We believe the rejection started with a UC flare two weeks ago. Anyone who has any knowledge of UC or any type of IBS will understand that when you have an active flare, things tend to go right through you. So, this is what we think may have happened to his anti-rejection medication.

The rejection was diagnosed on Friday morning. They immediately started him on IV steroids and Thymogobulin. His bili got up to 18, and his liver numbers were steadily climbing. Migraines were also an issue along with nausea. By Saturday, we started to see some improvement in liver numbers. Sundays' blood tests had his bili down to 14-so after his 4-hour Thymogobulin drip he was discharged. He has to go back to clinic on Tuesday, more blood tests and another 4-hour Thymogobulin drip. They may even repeat the IV drip Thursday and Monday depending on blood work.

There was some liver damage, but since the liver is a remarkable organ, they are hopeful that with turning the rejection around that it will self correct.

So, we keep are fingers crossed that we are indeed on the road to recovery.

Back in the hospital.

2009-04-30T12:46:00.007-05:00

Well, we brought Big Bird back out. He is keeping Big Bird company on this hospital stint.

Oh yes, now he has this rash (no clues as to why) on his back, upper chest, upper arms.

Neck, and hair line as well.

The lovely yellow hue has returned. Sporting a bili reading of 17. Yeah.. we are back to pre-transplant numbers.

Isn't it a grand shade?

They repeated the MRI last night, and today was told there appears to be a little fluid, but everything looks normal. WTF???? Are you kidding me???

The did a liver biopsy this morning. So we shall see. They say he is a mystery. The blood works says something is wrong, yet the both MRI's and the first liver biopsy say different. Negative for all Hepatitis strains. ARG!!!!!!

Too Good To Be True!

2009-04-21T10:37:00.002-05:00

After 16 months post transplant. Great lab work (with a minor exception for the toll Prograf takes on the kidneys)...Big Bird is once again-yellow.

Friday things just turned. It is amazing how quickly they turned. He was at his GI on Thursday for a routine follow up-all was well. Friday afternoon, onset of vomitting and jaundice. Admitted overnight-pumped with steriods and released.

Now, here is it Tuesday, his bili is up to 9. They are admiting him in San Antonio in the transplant hospital. They are currently rounding up the transplant team. They plan to run tests and do a liver biopsy.

So we wait........

Moving On

2009-03-10T12:31:00.002-05:00

I know it has been some time since I posted.

Big Bird, has moved on. Yeah!! He moved into his own apartment in January. He went back to work on a part-time basis in February. SSDI is working with him to ease him back into the working world.

So, needless to say, ALL IS WELL!!!!

Big Bird is 15 months post transplant this month. Other than some minor elevated kidney numbers everything is working well.

8 Months Post

2008-08-13T10:18:00.002-05:00

Yesterday Big Bird was 8 months post transplant. Liver results are in, and he is doing P-E-R-F-E-C-T!! He has truly been blessed!!

Thank you to everyone who has and continues to keep him in your prayers.

Big Bird is in school now, and doing ok. He is taking a Business Management degree course, so anyone who knows him well, knows that written communication (verbal could be questioned) is NOT his strong suite, but luckily he has a cousin who is very patient with him and has been a great tutor for him.

I will have to get some recent pictures up of him. We still have not written to the donor family. Though this is close to our hearts. We talk about doing this frequently, but the words just seem to fail us. But we will continue to push through until we can most express the gratitude and love we have for this family.

Difference

2008-07-02T10:35:00.004-05:00

I thought I would do some comparison for the eye....

This is Big Bird, June 30, 2007. Jaundice, 187lbs of skin & bones. Sick....he wasn't even sure he wanted people over for his birthday.....

This is Big Bird, June 30, 2008 (well actually it was June 28.. but really you get the gist!) NORMAL color, his baby blues are back, no jaundice to be found! 218+lbs of healthy weight! (he is after all 6'10") His face is full and round, not that sunken sick look of a year ago.

So, yes, I would say, Big Bird you had one of the BEST birthdays you could have ever imagined!

And just for giggles.....

Here is the cake his friends got him for his birthday bash with his friends...

Happy Birthday!

2008-06-30T10:34:00.003-05:00

Happy Birthday Big Bird. You are now a whooping 32 years old! And 6 months post transplant.

???????

2008-06-17T07:53:00.002-05:00

I am tired! I am ready to stop being the sister and the primary caregiver. I am ready to give up! I am ready to have my own life!

Six months post transplant, he is doing remarkable well medically speaking. But now....now I am tired of the fights! Here is the latest...

Big Bird: "Saturday night my friends are throwing me a birthday party at Grahm's, do you wanna go?"

Me: "No...why are your friends throwing you a party in a bar? Why are 30 & 40 year olds still hanging on to the bar scene?"

Big Bird: "They are my friends, I don't say anything about your friends"

Am I the only one who questions the intelligence/intentions/friendship of "friends" who throw a birthday party in a BAR for a liver transplant recipient?????

Of course this is my rant...so I won't post it here....I'm just beyond patience level anymore these days.....sigh............

Stand Up to Cancer

2008-05-29T14:14:00.002-05:00

The networks news anchors are coming together and launing a new fight on Cancer. In honor of my Aunt Karen-I donated and launched a "star" in her memory. You can learn more of this initive here.

Idaho bound!

2008-05-07T16:29:00.003-05:00

I am a total gluten for punishment. Being sentenced to two weeks on a road trip with the crazed lunacy of roid raged person!! Please pray for Big Bird's well being, other wise he could find himself left on the side of the road in stinky New Mexico never to be heard from again... Otherwise, it is some Grandpa visit time!!!

Dear Aunt Karen

2008-04-30T12:47:00.002-05:00

Early this morning our dear Aunt Karen lost her battle with lung cancer.

Life

2008-04-14T11:25:00.002-05:00

Life happens. Big Bird gets his transplant. He is doing, as he doctor puts it last visit "spectacular".

Now, my Aunt Karen has stage 4 Lung Cancer. She is a fighter! It breaks my heart. I just pray that she is kept in comfort while she goes through this.

Happy St. Patrick's Day!

2008-03-17T10:39:00.001-05:00

Myspace Layouts

And A Very HAPPY BIRTHDAY to Grandma!!!!!

3 Months

2008-03-14T13:31:00.001-05:00

Big Bird is 3 months post transplant. He is doing VERY well. Tomorrow he will start to wein off of the one of his anti-rejection medicines.

I can't believe it is already 3 months. The change has been immense. He is gaining a little bit of weight (oh how he desperately needs it).

We will be out and about all weekend-so I will get some recent pics and post them next week!

Looking, well normal

2008-02-21T11:54:00.003-06:00

People are often amazed at how much Big Bird's appearance has changed over the last couple months. Most of the jaundice has disappeared. The yellowness in his eyes is mostly gone (just a wee bit in the corners of his eyes). His face is filling out-the sunken skeletal look-no more!

He almost looks HUMAN! No, if only he would act human and I wouldn't want to kill him for his obnoxious antics on a regular basis (but I suppose that is me just being a sibling).

He is 2.5 months post transplant. All is going perfectly. He even managed to not catch the flu bug Melissa & I both got plagued with for nearly 3 weeks.

All is well

2008-02-11T15:08:00.001-06:00

Tomorrow marks a 2 month milestone. Two months ago tomorrow Big Bird received his liver transplant. He is doing very well. He doesn't look skeletol anymore. He actually has some roundness to his face. He belly has healed nicely. Each day is a day of progress. He still has days were he is easily exhausted, but for the most part-he is doing well.

We talked this weekend about preparing to write a letter to the donor family. This is a difficult thing to do. How do you thank someone for something that goes beyond measure? It is something we feel we need to do, just trying to compose the right words and the appropriate tone has been hard. We are truly greatful.

I will get some pics posted soon of the scar and of Big Bird.

Normal Labs

2008-01-19T09:56:00.000-06:00

For the first time in years!!!!! Dustin has normal labs. It is amazing what the last few weeks have brought us.

Dustin goes to two week appointments now. So no more clinic until February 1. He has been to very blessed in this whole situation.

His skin color is normal, his eyes are normal, his labs are normal (too bad he isn't normal-hehe). This has been such a blessing. Tomorrow he will venture in to a public setting for the first time (aside from doctor visits)-he will be going to church-everyone is very excited.

Happy New Year!!!

2008-01-10T14:35:00.000-06:00

Well, Happy New Year! What a whirl wind we have been through. I apologize for the lack of updates. All is going well on the home front. Dustin's labs are coming more normal in range each week we go to clinic. His liver is doing a fantastic job. His color is darn near normal.

Last week, Jesse took out the staples from the incision. Dustin was very happy about this, as they were beginning to stretch and becoming increasingly itchy. A good thing-since this is an indication of healing.

The picture on the left is all the staples out and them prepping for the adhesive "stitches". this just protects the incision and holds it together as the healing continues. Of course this is Big Bird admiring the new stitches.

They rearranged his medications last Friday as well, and now he is on a once a month breathing treatment. His potassium levels are too high, so just something we have to watch out.

He has been suffering from headaches-side effect of the Prograf-we are told this will level out once they find an appropriate dosage for him-so it will change from week to week for awhile.

After a very long clinic day Mom, Dustin and I went to the Bass Pro Shop in San Antonio-outside they had this cute Fish, so I told Dustin he had to take a picture and well- I will let you come to your own conclusions on that one!

Mom came around the corner, and took this pic of the two of us!

Seeing is Believing.....

2007-12-27T16:41:00.000-06:00

The above photo was taken on November 1, 2007. Dustin & I at a friend's Birthday dinner.

This is Dustin and I on December 21, the day he was getting released from the hospital.

This was Dustin yesterday morning. It is amazing, truly amazing to watch how his color has come back. How his skin has been completely changed but this amazing new liver. We really need to name his new liver-it deserves a name (I have mentioned this before and Big Bird really wants to name it Grapefruit-since that is a big no no to transplant patients)

The gratitude of this gift is without the a doubt, the greatest gift anyone could have wanted for Dustin or our family this Christmas! I know I keep saying how grateful we are, you no words truly reflect how we feel, how Dustin especially feels. He is so thankful, but he is so sad by the means in which he got this gift.

I hope you Christmas was as blessed as ours was!

Some updating and photos!

2007-12-27T16:31:00.001-06:00

I'm free, I am really free.....This was Friday, December 21, 2007 when Big Bird was released and being escorted to the car.

To the right is Big Bird's Transplant Educator-Darnell. He was great and also a fellow PSCer transplant patient. We learned so much from Darnell-thank you Darnell!!!!

Big Bird Christmas Morning. He got lots of bath products-as he loves hot baths. Unfortunately he can't take a hot bath right now, it is all shower time....and of course his Christmas presents were purchase before his transplant....so.....

To the right again, Big Bird 15 days post transplant. His color is remarkably normal...Such a difference....

This is Big Bird's delightfully scrumptious breakfast!

Merry Christmas

2007-12-25T01:56:00.001-06:00

Dustin is doing very well. He is adjusting to a position that is more comfortable for him to sleep on (he was a right side sleeper). We are getting his drugs down pat, (thank goodness we are both paranoid about missing one). He has started some swelling, but only what is "normal". Today we went out for a walk, just down to the end of the street and back-about 5 houses. We took Poochie & Bella so that was the adventure for them...

His color has improved even since we got home. I have given him a few days "off" from photo taking (it didn't help that my house has been in total choatic mess either). But with it being Christmas we will have some photos to be had.

We are so blessed this Christmas, this is surely to be one of the sweetest ever. We will all have his donor family in our hearts this day-for their loss gave Dustin a new life-new hope.

Merry Christmas. May each of you have and feel the spirit of Christ this very remarkable day!

Home

2007-12-21T22:01:00.001-06:00

Big Bird got discharged today! He is home and adjusting. I will update more tomorrow, I am in need of some puppy snuggles!!!!

Poochie is 7 today!

2007-12-21T09:09:00.001-06:00

The sweet little Poochie is 7 today... Happy Birthday Poochie Poo. Treats will be in your near future! (with any luck your buddy will be home today too!)

Day 8

2007-12-20T22:32:00.000-06:00

Day 8 finds us suffering from "roid rage". Webster defines it as "Uncontrolled physical or verbal anger exhibited due to excessive anabolic steroid use"

They had to give him additional steroids for the slight rejection episode he had yesterday-steroids and Big Bird not a happy combo for anyone involved!!!

Other than that he is doing well. FINGERS crossed we can go home tomorrow. I am so ready to go home and see my fur babies.

Here is a pic of the liver pillow we have been having everyone sign. We will have to take it to a couple doctor appointments to get everyone whom we have missed to sign it. What a great thing to have! We want to get a shadow box to put it in.

To the right is some balloon love Big Bird had been feeling. All the fur babies of the house sent them, along with his Monday night fur buddy- the Suki Doodle and her momma Edie!

One Week Ago

2007-12-19T09:04:00.000-06:00

One week ago today Big Bird got the call. It is hard to believe it has only been a week. What a whirlwind we have all been through.

My deepest respect goes to the donor family. I cannot even begin to imagine what they are feeling. They made the hardest and most selfless choice any one person can make-and for that my family and I will be forever grateful.

I ask everyone to consider being an organ donor. It is the one greatest act of service you can do. The blessings of that choice reach so many people beyond the lives that it saves. You can visit the Donate Life website to learn more about becoming an organ donor!

Dustin got this really cool liver shaped pillow from the TX education coordinator. We have been having everyone that has helped in his liver tx from the surgeon to his nurses sign the pillow. What a great memento to take home.

He showered today, what a relief, his mop was looking quite greasy...he certainly needs a haircut. I offered to shave his head with the dog shears when we got home, it wasn't as amused as I was. hehehe

Today he is experiencing a slight rejection episode, he bili was up a few points. The hep doc and surgeon both said it was normal and "not to worry". They are upping the Prograf meds tonight and also doing some steroid iv this evening to combat that. His spirits are doing very well. He is eating better today. He is also walking the hallways 2-4 times a day. He set up for about 7 hours today as well.

We were hoping to go home tomorrow, but they want to watch the drugs a bit more, so it is looking like Friday or Sat. discharge. That is ok with us, he wants to go home, but at the same time is ok with staying for however longs he needs to be.

All is good!

2007-12-18T21:01:00.000-06:00

Dustin is doing very well. He moved to the Transplant Telemetry Unit last night. He has had all his drains removed, and all lines. He has one IV left where they are still drawing labs from. Last night he did his first walking around. He took about three walks around the unit today.

They have a Christmas Tree on the Transplant Floor that tx patients can put an ornament on that represents them, so in true Dusty fashion, we got him a Star Wars Darth Vader ornament. We signed his name, and liver transplant date, then he walked down the hall with assistance of the nurse hung the ornament on the tree. I got some pics will upload later.

He is definitely getting back to his normal self. IF things continue to progress the way they are, he could possibly go home Thursday or Friday.

The prograf (anti-rejection medicine) apparently really makes him tremble, they say it will get better with time. He had a slight fever last night, but it didn't last long, probably from all the excitement of moving rooms, and then being able to walk-which he hadn't really done in awhile. He is tender, but doing well.

I missed the doctors today-I got back to San Antonio about 40 mins after rounds-go figure.. But I will catch up with them tomorrow.

Some people have expressed wanting to send him something, absolutely nothing living (no plants, no flowers, no fruit) Balloons are great.

Jello anyone?

2007-12-16T20:48:00.000-06:00

The bleed seems to have stopped (insert jumping and cheering here). Big Bird is savoring the delectable servings of exquisite broth and sublime gelatin concoction. In other words he is eating!!!! Well sorta if you call chicken broth and jello eating....

But this is on the right track. I came home for a couple days to take care of a few things around the house and at work, then I will be heading back to SA. Mom is with Dustin in SA and will be there until he goes home.....Miss is staying home and taking care of all the fur babies.

Since he is eating, he should be able to get out of TICU in a day or so.. Now I need to investigate some obnoxious balloon arrangement to bombard him with...

Up swing

2007-12-16T09:01:00.001-06:00

Keep those prayers and good vibes coming.....Big Bird decided to take an up swing in blood counts over night. Maybe surgery will be avoided woohoo!!!! Still watching...but with the up swing there is more hope....(can you say R E L I E F)

Brag

2007-12-15T23:18:00.000-06:00

Today Big Bird had a total bili count of 6, this is totally amazing. It hasn't been 6 in nearly 4 years!!!!!!!

Still dealing with the bleed issue. They are still on the fence about surgery......I guess we wait and see if the call us in the middle of the night or not....oh the joys, do you sleep soundly or do you toss and turn in wonder???

Update & The Incision

2007-12-15T18:38:00.000-06:00

Big Bird is starting to look sooooooo much better. They are still unsure about the bleed, Dr. Washburn (surgeon) doesn't seem to be overly concerned. They are hopeful that it can be contained and controlled with blood. They gave him some additional platelets this afternoon, they still are not seeing the marked improvement for blood counts, so the went ahead and put him NPO for now, but they are letting him have ice chips-which he is very thankful for. His urine is normal for the first time in years. I couldn't believe it when I saw it. They took the bandages off the incision, you can see the staples now, and it looks great. He is starting to get "itchy" around the staples, we like that-means it is healing.... Below a picture for your viewing senses!

And Ladies & Gentleman......the incision!!!!

Thanks to everyone for their prayers and continued prayers. I have seen so many answered... For now we will be staying in ICU. We were hoping we would be getting out of there today, but oh well, better to be in ICU and under supervision then not at all ;-)

He has a good bit of his humor today. He sat up in the chair for a couple hours, and he even got up to utilize the facilities and "percolate" the bowels (teehehehehe)

We are keeping our fingers crossed that there won't be another surgery.....but they are not ruling it out, but are hopeful it won't have to happen.

Uh oh!

2007-12-15T08:38:00.000-06:00

Well in true Big Bird fashion, we have a complication. He is experiencing internal bleeding. They have given him 5 units of blood since last night, they are still seeing if they can control it, if not, we are looking at another surgery. So much for getting out of ICU today.

I will update when I know more. We are on our way to the hospital now.

Big Bird's Transplant Slideshow

2007-12-14T08:33:00.001-06:00

Progress Report

2007-12-13T20:08:00.000-06:00

Big Bird is in ICU recovery. He is doing VERY well. The doctors are just as pleased as can be with his progress. Everyone keeps telling us he is doing very good. They were able to remove his breathing tubes after just 10 hours of being in. Wow he is a strong soul!!!

We are all so overcome with emotions. So many miracles have been granted to our family in the last 24 hours that I am truly in awe at the power of Heavenly Father. We needed a blessing, the missionaries were 100 yards from our house before we left for San Antonio. Melissa and I were talking on our way home that we forgot to call and put Dusty on the prayer roll in the Temple, there is a message on our answering machine from our Bishop he was on his way to the temple in GA and would be listing him on the Temple list there. Every time we think we need to take care of something, Heavenly Father has provided it. They told us the surgery wouldn't be complete until close to 5am, it was done at 2am. Miracles are real and they do happen....

We are on an emotional roller coaster. One minute we are crying, the next we are stalwart! But he is transplanted. He is doing well. They are impressed with his progress.

My prayers are with the donor family that gave my brother this beautiful, priceless gift. I can't imagine what they are going through right now. They gave my baby brother a chance at actually finally having a life....my debt and gratitude to this selfless family is beyond anything words could ever define. They are my heros...........

Thank you for all our comments, Brenda B, Dawn, Lonnie, Katie, Edie everyone for your kind words. They mean so much. Once Dusty is awake enough to understand, he will be excited to hear about it!

Transplant Complete

2007-12-13T03:37:00.001-06:00

Nasty Old Dieased Liver..........

Pretty new Pink Liver!!!

Big Bird made it through surgery. It has been an emotional roller coaster. We are at the hotel and trying to get some sleep we can't get back into the hospital until tomorrow morning.

I have lots of phone calls to make....

Dusty did very well. Everything just went smoothly. Heavenly Father was certainly watching over him, everything was just falling into place today-there was no question who was in charge.

He is in ICU where he will remain for the next 72 hours. This is standard for tx patients. Anyone wanting to send something, please refrain from plants or flowers or fruit. Transplant patients can't be around them.

We have no phone or internet at the hospital so, I know y'all are wanting to get us, we are trying....please patients are prayers.

We are going to try and get him another blessing tomorrow so I will be making some church calls in the morning as well.

Will post more after I have had a chance to talk to a doctor sometime tomorrow....

the call

2007-12-12T16:26:00.000-06:00

We just got word from San Antonio. We are on our way.......

No more NyQuil!

2007-12-12T10:36:00.000-06:00

So Thanksgiving weekend my Mom & Jerry brought over the plague (a nasty virus that has been going around really). I ended up getting sick for nearly two weeks. Melissa ended up sick as well.

I finally got better, then Big Bird comes down with it. He was walking around the house Sunday morning asking why I was trying to kill him (please keep in mind that I have been sick and actually came home early the previous Friday). I told him, yes, yes I am trying to kill you. It is my goal in life to make you as miserable as I possibly can. ;-) (what are sisters for right?)

So, Monday night, he is still sick and had been taking Tylenol Severe Cold (yes he can take Tylenol even though he has liver disease we asked his liver doc!). I suggested he take NyQuil before he went to bed-what could it possibly hurt right?

So, I am in my nice warm snugly bed, and I get a RUDE awakening at 12:45AM, Big Bird busts through my bedroom door, thrashes on my light and yells, "Tiffany something isn't right"-I am dead asleep-startled to grogginess and he throws his florescent yellow eyes in my face and asked "are my eyes dilated?" Do you have any idea how frightening a jaundice persons face is when it is thrusted into your face in the middle of the night? It isn't a pleasant sight!!!! Apparently what little amount of alcohol that is in NyQuil made him drunk on medicine.

At this point he is trying to convince me we need to go to the ER, cause "it's not right", I told him to drink some water and go to bed. "Are you sure? I don't feel right", I respond, "Yes, Dusty, just get some sleep", he reluctantly lays down in his bed.

The next morning, I am up cleaning up the kitchen, he walks in ever so nonchalantly and exclaims "so, ya think I shouldn't take NyQuil anymore?" I ever so sarcastically respond, "ya think"

So, yeah, there ya have it, no more NyQuil for Big Bird!!!!

Christmas Photos

2007-12-05T10:28:00.000-06:00

We were taking some family photos in front of the Christmas Tree (thanks Edie) and this was Bella & Poochie waiting patiently with Big Bird for the photo taking to commence...

Ideas

2007-11-28T15:59:00.000-06:00

I am slow here, Big Bird has his local doctor appointment next week, we want to take his doctor and the office a holiday treat, any ideas????

Still Hanging In

2007-11-12T13:54:00.000-06:00

Nothing new to report really. Big Bird has his follow up Transplant Clinic appointment on Friday, so we will spend the day in San Antonio. Woohoo. Blood Work, same ole same ole.

Big Bird had a relatively good weekend. He got up and even went to church with me. Granted we left after Sacrament Meeting, but I will take what I can get with him. I am so thankful for the new Chapel that is so much closer to home. Everyone always greets him so kindly when he goes to church with me, I think he secretively enjoys the attention and the kinds words that are given to him. The Bishop was kind enough to come up to him directly and let him know that the Bishopric has been and continues to pray for him. Boy we will take all the prayers we can get.

I will post after clinic on Friday.

Happy Halloween!!!

2007-10-31T15:55:00.000-05:00

Just wanted to wish everyone a HAPPY HALLOWEEN!!!!!

A Couple More Photos

2007-10-21T14:25:00.001-05:00

Here is an up close and personal photo of our new Adventures in Big Bird's Liver World mascot. We found him in the gift shop at the hospital. We laughed, bought him, and now you will be seeing lots more of him, as he will be our escort on all things Big Bird Liver World related ;-)

The pic to to right is Jesse, Big Bird & Big Bird's mascot. Jesse is our one constant at the Transplant Clinic. We were sad to hear of his recent heart problems, but are happy is as good as new!!!

Transplant Clinic

2007-10-21T11:24:00.000-05:00

Big Bird had his monthly Transplant Clinic appointment on Friday. We had a good day actually, which is allot better than last month. Big Bird has a MELD score of 21. Dr. Espinoza was very nice. We got to see Jesse again, he is our one and only constant at the Transplant Center. He is one of the nicest guys. He was kind enough to take a picture with Big Bird & our new Big Bird Mascot. Melissa and I found him at the gift shop in the hospital. So he will be going on all our Transplant Adventures with us now ;-)

Mom had an emotional day, she is an O blood type, but she wouldn't be a match to Big Bird. That was hard for her to hear. She almost cried on the poor doctor. Silly mama.

*If you have trouble with the slide show go to this link*

OK Back to Traditions

2007-10-20T00:48:00.000-05:00

We went back to a traditional layout for Big Bird. This will make it easier for everyone to read! ;-)

We did go to SA today for his monthly pre-transplant clinic appointment. All went fine. He still has a MELD of 21. Not sure where this places him on the list-but probably right around 3 still. I did take a few pictures today from our outings, so once I get them uploaded I will give y'all a slide show ;-)

New Design

2007-10-07T12:56:00.000-05:00

Lemme know what you think of the new design....

I lost some of the links with the new layout, so....if ya know of something that is related to PSC or Big Bird and want it linked, leave me a comment and I will get it updated!

Look At Me!

2007-10-07T11:45:00.000-05:00

Nothing new with Big Bird. I just laughed when I shot this pic. Aukee wanted Big Bird to just look at him. Every now and then Aukee really wants cuddle time ;-)

Why on earth?

2007-09-21T12:39:00.000-05:00

As you are well aware, SA did an ERCP with stent placement back in July. A month later, Big Bird was in the hospital-in ICU with a Cholangitis Infection.

This morning, they leave a message on the answering machine, they want to schedule another ERCP. WHAT IN THE WORLD ARE THEY THINKING?????????????

Big Bird called his nurse, waiting on a call back, if that doesn't go anywhere, we are calling his local doc and having him call and have a chat. Are they trying to make him sicker?????

SCREAM SCREAM SHOUTING OBSCENE LANGUAGE FROM THE TOP OF MY LUNGS!!!! ARG!!!!!

Follow Up Transplant Clinic Appt.

2007-09-21T11:34:00.000-05:00

So Big Bird had a pre-transplant clinic appt. on Wed. He left very frustrated. His MELD score is 21. He is no longer #1 on the list, he is actually #3. Apparently 2 other people got sicker than him. Not that I don't understand this, it is just frustrating. I belong to the PSC Support Group on Yahoo-I really don't know what I would do without that fine bunch of people. I posed a question to the group-asking if the transplant centers kept you updated on your listing status. The general consensus was that no they did not.

I know that if he is to get a liver transplant, it will be when the time is right. I truly believe Heavenly Father's plan is much greater. I am comforted that I know this. It is just a frustrating situation to be in.

We are tethered to an imaginary leash-waiting and wondering. But at least we have humor, sarcastic and dry as it may be-but it is there. We have faith, that things will work out the way they are meant to. We have family-whom we yell at, love, cry with and hug. With all this I say Big Bird has it made for whatever the outcome may be!

Our Aunt Karen

2007-09-19T10:39:00.000-05:00

I ask for prayers & good vibes for our Aunt Karen. She has recently been dx with cancer. My Grandma keeps assuring me that she is in good spirits, and I am glad to hear that. Just so you know Aunt Karen-we love you and prayers are being said, good vibes are being sent!!!!

Still Waiting

2007-09-18T14:25:00.000-05:00

Big Bird is still waiting. He is doing ok. I think the antibiotics have all left his system, so now he is getting back to his "normal". Big Bird and Mom are heading to San Antonio tomorrow for his clinic follow up. They will redo his blood work, and meet with the hep doc just to keep things up to date. I will post when I know something. I will email his nurse for blood work results since they never seem to know it there.

Feel free to leave comments, we love to hear from everyone.

Poem

2007-09-14T09:52:00.000-05:00

One of the members of the PSC group I belong to wrote this poem and posted it today, so I had to share, it is funny and whitty!

Keep Hope in Sight

Yellow eyes, jaundiced skin,

What a lousy shape I'm in,

Swollen ankles, sloshy belly,

Squishy like they're filled with jelly,

Itch and scratch, til it's sore,

Then I itch and scratch some more,

Cramping legs, cramping feet,

Stretch them out and then repeat,

Sleepy days, up at night,

Thinking isn't quite so bright,

Am I tired or am I lazy?

This itching's going to drive me crazy!

Colors seem to fade to grays,

As I'm feeling more malaise,

But keep a future hope in sight,

When yellow eyes will turn to white,

Fluffy ankles will deflate,

Maybe I won't sleep so late,

Surely I won't feel so drained,

Certainly I'll feel less pained,

Thank you Lord, there's hope in sight,

When yellow eyes will turn to white,

By transplant or Your glory bright.

Written by: Darryl Powlison

Who Is Big Bid?

2007-09-13T09:43:00.000-05:00

It occurred to me that when I started this blog, it was to keep our family & friends updated on Big Bird's health and progress etc. It is hard to call everyone with all the info. But as time has gone on, it has occurred to me that our family & friends are not the only ones reading and stumbling upon this blog. So, I thought I would let you know a little bit about who Big Bird is.

Big Bird is my wittle brother. I say this as he is my younger brother, but he is actually 6'10" tall. He is also currently sporting a lovely tinge of yellow in his skin & eyes (mostly eyes right now-he is looking ok skin wise currently). Hence the name Big Bird (tall and yellow).

Big Bird has been sick since he was about 15 years old. He broke his leg, and things just spiraled from there. He starting "passing" blood, come to find out he had bleeding ulcers in his colon. He had to have a couple blood transfusions-he is actually surprised to have survived as his blood counts would be extremely low.

When he moved to Austin, and ended up in the ER with a colitis attack, we found his excellent Doctor. He was able to finally after about 5 years of dealing with the colitis, get it under control. Dr. Ziebert continued to keep Big Bird under his wings. In 1999, his liver function tests starting coming back abnormal. They did an ERCP and discovered that Big Bird had PSC. We were told that he would need a liver transplant in about 5 years. As time went on, he would get occasional episodes of UC, and occasional episodes of liver related infections.

In 2005 they did an ERCP and stated that stenting would no longer work that transplant was now an option that had to be considered. Well at this time, Big Bird had to insurance. Since his health was declining, energy fading, labs getting worse, itching becoming unbearable, with consultation from his doc we decided it was time to apply for SSDI. SSDI was granted, but the kicker with that is Medicare takes 2 years to kick in before you are eligible. He got a couple cholangitis attacks, symptom's got worse and we really started to fear.

On February 1, 2007 Big Bird got Medicare. On February 9, we were meeting with the Transplant Clinic. In April 2007 Big Bird was being evaluated for Transplant. In May 2007 Big Bird was listed.

Now we just wait. Big Bird is #1 for his Blood Type (type A) he has been this way for a couple months now. His labs will be redone next week when he has a transplant clinic appointment.

The last couple weeks have been really good actually. But as anyone who knows how PSC works, you NEVER know how long that will last. So you take each day at a time.

Well, that should give everyone who doesn't know Big Bird some background and even a little bit of explanation to his nick name.

Nap Time

2007-09-10T15:04:00.001-05:00

After the trip to the dentist this morning to fix falling crown and a yummy breakfast taco breakfast, Big Bird, Aukee & Jasmine decided it was time to cuddle up and watch a movie this morning.

I had to laugh, so I snapped this photo while I was leaving for work. Aukee is such a nerd, doesn't he know yarn is not a pillow??

Caution-falling teeth

2007-09-09T19:44:00.000-05:00

Big Bird's crown decided to fall out this afternoon. We had to call in to the dentist, so we are seeing him first thing in the morning. Then, we had to drive all over the place (which I try to avoid shopping on Sundays) looking for an emergency crown repair kit. Oh the joys!!!!

$18756.00

2007-08-31T14:57:00.000-05:00

Four days in ICU.
Four packets of Fresh Frozen Plasma
IV Antibiotics
One Vitamin K shot in the bumbum
One EGD to remove previously placed Stent

Total comes to $18756.00

Boy am I glad I spent sometime reading all the Medicare Stuff and consulting with a Medicare Insurance provider to make sure he got a fantastic supplemental policy.

wowsers....just had to share.....

Grumpy

2007-08-28T15:16:00.001-05:00

Ah, the Grumpy ones. Big Bird & Aukee......

Depression

2007-08-27T16:09:00.001-05:00

Depression has reared it's ugly head. Not a good time for anyone that is around Big Bird. I hope it is just a short fit, but I don't know. He was so optimistic about getting a transplant soon, but that time has come and gone. He is really scared his liver is (in his words) "shot".

I really don't know what to do. It is hard to watch it, but what choice does one have?

We will stay positive, and keep our fingers crossed that he doesn't get another infection and a transplant comes sooner rather than later....

Still #1

2007-08-24T11:35:00.000-05:00

We found out yesterday that Big Bird's MELD score is now at a 21. He is still #1 on the list, but only at his center. He is doing much better. Still has some liver tenderness, but overall much better. He has a couple more days on the Levoquin, so....fingers crossed.

Parolled

2007-08-17T10:40:00.000-05:00

Big Bird was parolled this morning. One last push of IV antibiotics, then 10 days of levoquin.

But he is home. Have to go and fill perscriptions....He is in much better spirits today. I think he may even be making a WOW appearence this afternoon.

Poochie Therapy

2007-08-17T08:11:00.001-05:00

We successfully smuggled in the Poochie for some "Poochie Therapy" last night. They were happy to see each other ;-)

Big Bird was moved to the 4th floor. So now he is very ready to come home. I think we are suffering a wee bit of depression-not that I can blame him. I just wish he would eat more. He has lost at least 10 pounds (I wish I could) through this whole ordeal. Not good for such a bean pole already.

He will hopefully be coming home today. I am getting ready to head to the hospital here in a few mins. So I will post when I get home.

We ARE getting out of ICU

2007-08-16T13:53:00.000-05:00

They are working up the orders, and he is going to a regular room this afternoon. They want to keep him on the IV antibiotics through tomorrow morning, but doc said as long as the fever doesn't come back, he can go home tomorrow.

Since he is going to the regular room, I am thinking it is necessary to smuggle the Poochie in for some "pet therapy". Big Bird is certainly low on the Poochie kisses quota!

It has been a whirlwind of a week. Things were really scary Monday night, Tuesday and even into Wednesday, but Thursday has seen glimpses of Big Bird returning to himself.

Now we just hope and pray for a liver to come sooner rather than later, and that we won't have any more of these hospital scares before the big surgery.....

Much Better

2007-08-16T09:19:00.000-05:00

Big Bird is MUCH BETTER. He hasn't had a fever since last evening around 7. There is even talk about him getting out of ICU today and moved to a regular room. Woohoo-he would really like to take a shower-and this would give him the opportunity to do so! If he gets moved, I'm gonna see about getting permission to bring in the Poochie for a visit, I know Big Bird and Poochie miss each other. Well all the fur babies miss him really. They keep going to his room looking for him.

As of now, he is still number one on the list. Not sure if they will change it since his blood work is markedly improved. I guess we shall see.

I will update when after the doctor makes his rounds and we can ask some questions.

Wednesday Update

2007-08-15T18:24:00.000-05:00

Big Bird has been running a fever off and on all day. It was back up to 100.5 around 4 this afternoon.

They took the stent out, the doctor seems confident that this was the issue and things should just get better from here on out. They still have him on IV antibiotics, and well keep him in ICU at least through tomorrow. There is a possibility he might get to go home Friday-fingers crossed.

When things got scary, they listed his MELD score at 40-this is the highest it can go. This is his MELD score listing as of right now. His INR was down significantly to 1.47 today as well-yippie...

Really right now he needs a transplant, I don't know how much more he or any of us can take of this. He seems to be down right now. I left the hospital early tonight, he didn't get much sleep last night, so hopefully that won't be the case tonight.

Don't really have allot today......good I suppose.

fever, fever go away!!!!

2007-08-15T07:37:00.000-05:00

Last night the fever jumped up to 103.....they decided to wave the 48 hours on antibiotics and take the stent out today. That will be happening this afternoon. So instead of fever decrease, we have fever increase. ARG!!!!!!!

Big Bird said he was doing ok this morning. Mom is on her way to the hospital now. I have to go into work for a couple hours to take care of a few things then I will be at the hospital.

This has been a report of the Big Bird broadcasting network.......

TIRED!!!!!!!

2007-08-14T22:02:00.000-05:00

Big Bird was resting when I left. He requested saltine crackers-it is about the only thing he can keep down right now. Oh the exquisite taste of saltines ;-)

Fever was back this evening, 100.9 when I left. They changed up the antibiotics to every 4 hours instead of heavy dose of levoquin once every 24 hours. He will be in ICU for at least another 24-48 hours. There is a possibility that they will transfer him to SA at the end of the week, so I guess we just wait and see.

His INR is what has everyone jumping through hoops. It ain't a happy thing. All they can do for him is try and control the infection, control the pain and pray for a liver donor. How bitter sweet is that???? Hey can someone please die so my brother can have a life???? Crass I know, but I am tired and I really am just a snot right now.

I will post an update tomorrow, but for now, I am off for some very much needed sleep!!!

We are #1

2007-08-14T17:16:00.001-05:00

Well it is official we are having a bout of cholangitis. Oh the remarkable joys. He is on a pain pump now to hopefully help control the pain-we shall see.

It was the INR that was throwing loops this morning. It was 6, it is now 3.36, still high, but better.

But with this latest development and the INR numbers we found out this afternoon that he has officially been bumped to #1 on the transplant list for his blood type at his center. Scary news...

I have the RS president coordinating with the bishopric to get someone down here to get a blessing so hopefully that will be happening this evening.

That is the latest from the deluxe ICU suite....will let ya know more when I can.

ICU-woohoo

2007-08-14T11:15:00.000-05:00

So Big Bird as a deluxe suite in ICU. He decided he wasn't getting enough attention at home I guess. Bella is not impressed with the lack of belly rubs.

The low down.....Monday morning (8/13/07) about 1am Big Bird had the onset of liver pain. It intensified, so he took vicodin, that didn't seem to help. About 7pm, he started with fevers, with the highest one reaching 100.5 (this is not good for liver patients). Vomiting set in shortly after. About 9:30pm we made the call to head to the ER.

They did a bunch of blood work, and cultures. About 3 they decided to go ahead and admit him (this is a story in itself as in my experience ER docs are morons w/liver disease patients). We kept asking what room he was going to be in, they finally came to move him, and we find out they are putting him in ICU. (Shock and dismay now sets in)

They started Fresh Frozen Plasma (sounds like a winery sell-hehe) about 4:30 this morning. His clotting (I really need to talk to a doc so I can get some terminology here) has improved some he was a 6 when admitted, and he is now at a 3. However even with morphine the pain is not improving. Lots of sensitivity and tenderness. Big Bird is not a happy camper....

Will post more after I can talk to a doc and find out what is going on and the plan of action....

amused

2007-08-09T17:21:00.001-05:00

I simpsonsized big bird...hehe I am too easily amused. I will have to get a photo of myself to try ;-)

Have fun with it yourself visit http://simpsonizeme.com/

Listing Status #2

2007-07-31T10:51:00.000-05:00

Dustin's MELD score did increase to 23.

MELD lab results are as follows:

Sodium 138

Creatinine 1.0

Total Bilirubin 14.0

Albumin 3.5

Ammonia 28

INR 1.8

The above information is the most current. Big Bird is now #2. He is getting very anxious & nervous. This is something that has been needed and wanted for a long time, but it is also very scary, cause you never know just how you might react to any of it.

His hospital quilt is almost done. Just have to make a final decision on the back. We got one hospital gown sewn and put through the wash, gotta pull it out of the dryer and see what if any changes need to be made before making the others.

The above pic is from July 19, the day before his ERCP. It almost looks like two siblings that like each other ;-)

Update

2007-07-28T19:08:00.000-05:00

Friday we went to San Antonio again and met with the hepatologist. He was very nice this round. He expressed concern and hope actually. This was a first since we have been going since April.

He concluded that the ERCP they did on July 20 showed that his best option at this point is transplantation. They did put a stent in, but it seems to be causing some discomfort. They also found a hernia in his abdomen. The hernia will be fixed during the transplant surgery. They redid all his blood work, and he came back with a MELD score of 23. This is a point higher than his score from a couple weeks ago. His hep is hopeful that he will be transplanted soon. He has moved up on the list but he couldn't give an official listing status. The person that was ahead of him received a transplant on Friday...so it is possible that he could be #2 or #1.

Prayer Requests.....

2007-07-24T23:10:00.000-05:00

As if dealing with Big Bird isn't enough, we found out tonight that my Aunt Karen has some scary health issues brewing. She is in the hospital, and I know that I am at least sending positive thoughts and vibes her way. Hopefully we will know more tomorrow, told my Grandma I would call for an update. She is dutifully staying put and taking care of all the fur babies. It is times like this that I regret that I live so far away from my family....

ERCP & All That

2007-07-24T10:33:00.000-05:00

On Friday, July 20 (Happy Birthday to me!) Big Bird had an ERCP in San Antonio. Things went ok, they found that his left half of his liver is completely scarred from cirrhosis, and there was minuscule openings on his right side of the liver. They did place a stent, but were not confidant that it would do any good (surprise there-I really don't know why some doctors just can't listen). Well, later Friday night the pain from the ERCP was so intense that we made a trip to the ER he also had an added symptom of nausea, after 6 hours, we did get to go home. Of course Big Bird was no longer in pain with thanks to morphine.

Yesterday was better, but he pain made an appearance again today. Looks like we will be heading to SA again soon. Hopefully they can see him this week, otherwise, I will have to leave Mom & Big Bird to fend for themselves as it will be hard for me to escape work for 10 days while Miss Edie is seeing the wonders of Alaska (this is where I submit mass amounts of jealousy).

New Lab Results

2007-07-17T11:46:00.000-05:00

So Big Bird had blood work done yesterday. His nurse emailed me this morning. He has a new MELD Score of 22. He is #3 in his blood group.

Since I actually have the lovely lab results here are what they look like:

Creatinine = 1.1

Albumin = 3.2

Prothrombin time = 14.8

INR = 1.6

Bilirubin, Total = 11.3

Sodium = 140

Lots of scary numbers. His Bili actually is really good right now, surprisingly. He started having lots of joint pain yesterday, he had grown used it to I guess, cause he wasn't complaining too much this morning.

Big Bird is having some tests done on Friday, so hopefully we will know what the cirrhosis is like in his liver and how bad the scaring is. We are hoping that maybe they will be able to drain some bile as well, that would help with the itching, but who knows.

The Boys

2007-07-13T10:28:00.001-05:00

I took this picture a couple months ago when my grandpa was in town. We were driving in downtown Austin, and all the "boys" were all looking out the window at the same time. It was too cute so I had to share.

FALSE ALARM

2007-07-10T13:01:00.000-05:00

THIS HAS BEEN A TEST OF THE DUSTIN EMERGENCY BROADCASTING SYSTEM!

We just spoke with Big Bird's nurse coordinator and the liver didn't come through. They think it went to another hospital-so hopefully it is a good match for that recipient.

This has truly been a test on preparedness for all of us. We were able to get him a blessing this morning, and that brought comfort. We certainly now know what we need to do to prepare.

His MELD is still 19, but apparently it isn't a very long list at this hospital, so he is right on up there.

Time to resume normal life, and certainly a time to reflect on what we need to take care of.

The Call???

2007-07-10T10:24:00.000-05:00

This morning we received a call from UTHSA that they may have a potential donor for Big Bird. We will know more by 11AM. I am sooooooo unprepared. I should know better. Have been trying to get phone numbers so that we can hopefully get a blessing for Big Bird at least in SA.

Even if he doesn't go, he will certainly need one for comfort after today.

When we know something I will post.....

Love & Prayers to all of you!!!!

Harry Potter

2007-07-05T16:31:00.000-05:00

We are nerdlings! I just ordered our tickets to see Harry Potter and the Order of the Phoenix on IMAX no less. So yes we will be see Harry on IMAX in 3D. That should be interesting. We are even taking Mom along for the adventure.....

I guess the appropriate thing to do this weekend (since we actually don't have a ton of commitments) is to try and have a Harry Potter movie marathon.

Go here http://www.harrypotterorderofthephoenix.com/
you can watch the trailer, they even have some fun downloads and other things for you Potter fans out there.

Birthday Success

2007-07-03T13:21:00.000-05:00

We had a fantastic day. Lots of laughs, and lots of "child play". We got nerf guns, and well, all I can say is take cover. There are four around the house now and no one is safe-:-)

Even the puppies got in on the festivities and wore party hats- well at least some of them did. They were not to sure about it. Dusty dog did ok as long as he was able to hug next to Edie. Jasmine was just fine with her bone in her mouth. Bella was annoyed-true to herself that is. And Well we attempted Aukee-and he wouldn't have ANY of it. As soon as it went on, it came right off. Poochie was hiding in a small dark corner enjoying the yumminess of a Baconstrip bone. Suki-every the beauty queen did smashingly well.

We are in the full throws of Birthday Season. Jerry's birthday is July 5, then we have Melissa's on July 18 & mine is shortly there after. Good times. So I am sure I may be able to add another photo spread again.

enjoy the goofiness.

Happy Birthday Big Bird!

2007-06-29T16:03:00.000-05:00

Happy Birthday Big Bird!!!!!

Big Bird's Birthday is on Sat., June 30. He will be celebrating 31 years of annoying me!
(I really should have been an only child!)

We are having a quite family celebration at home with a couple of his close friends for a BBQ and lots of visiting and catching up. The Fur Babies will get in on the act as well and celebrate along with him with some delectable treat that I will have to figure out today. I think we are expecting 12 adults and 6 fur babies....hehe

As for an update with where things stand, we are waiting to hear from UTHSA for scheduling an ERCP. They want to do this for exploratory purposes to see what is going on in is bile ducts and liver. This will be done some time in July-but who knows when-since we thought we would have heard something by now. He has been somewhat good the last few days-so that is very good.

I do want to send out prayers and well wishes to the Henshaw family from the PSC Support Group on Yahoo. Ken had his transplant and they have been through the ringer with complications, good news, worry, etc. If you can send some extra prayers to them, that would be grand!

Have a great weekend everyone...(and also Happy Birthday to Aunt Karen-her birthday is today)....

Tattle tail

2007-06-21T12:24:00.000-05:00

Tattle Tailing...

Yes, that is what I feel like we did. We tattled tailed. We met with his regular doctor, and told him how we just didn't feel like the hep docs were on our side. That they just didn't give us the warm fuzzies. How every time we leave San Antonio, we feel hopeless, and lost. At least his doctor gives us some hope that he will get through this. He said he would talk to them, and see if he can't arrange for us to meet with one doc every time we gone from now on. We shall see....

Big Bird isn't feeling so hot. The itching got REALLY bad yesterday. They called in a script for an antihistamine and at about 5:30 this morning it knocked him out, it has helped a wee bit, but he has scratched himself raw and drawn blood in a few spots. Took him in this morning for lab work-we shall see if it reveals anything. I am not convinced that blood work tells the whole story-but again I am not a medical expert, just the one that lives with Big Bird. The fatigue is really bad, probably worse than normal-too bad he can't sleep-I get tired just looking at him.

But, my last few posts have been a bit of a downer, we haven't lost our sense of humor I assure you-it is in tack and in full use in our house. In the sick and twisted way we are, he complains he doesn't feel good, I tell him he is just fine, after all his MELD is only 19.....(again sick and twisted).

We had to take a Transplant Education Class last week, one of the things it says, you can't have Grapefruit, or Pepper after transplant. But the most disturbing, you can't allow your pets to sleep with you after transplant. Good luck explaining that one to my dogs-whom all believe he is a giant pillow to maul and snuggle in the afternoon. I will let him explain it to their pouty little faces, he can have 4 puppy heads staring at him in wonder as to why, WHY they can't maul and snuggle. Yeah, that is gonna work out well...

Scream

2007-06-14T15:32:00.000-05:00

Do you ever want to SCREAM??????

I know we do. For those that have never had the opportunity to encounter a transplant situation, count your blessings. It has to be one of the scariest, most frustrating, infuriating, agonizing, helpless waiting you will ever encounter.

We had a follow up appointment yesterday with the hepatologist. Hoping for some insight into new symptoms, waiting time, MELD reconfiguration blah blah blah. No real explanation for the feet swelling, no real explanation for the "burning sensation" his skin gets when he sweats, no explanation for the increased liver pains and back pains. Instead we get sent home with a pat on the back, your MELD is still 19, everything looks good we will see you in 3 months. Oh my the way your MRCP last month was inconclusive, but we think we want to go ahead and do an ERCP (obviously there is no way his current doctor could be correct in the fact that and ERCP is not an option for him).

I don't know about you, but it is really frustrating when all you feel like is a statistic, a number. Which essentially you are when waiting for a transplant. We worked, prayed so hard that he would make it to be listed, we finally made it then, it seems that every time we visit the hep doctors we get sucker punched, and any hopes that he will actually be transplanted are dashed. We were told yesterday that they will prolong transplantation as long as possible, especially since his liver was still functioning. They do offer exception points, but again, he isn't a candidate because his MELD is only 19, and his protein production is within an acceptable range. His bili is down 14.2, but they do show him as having a vitamin A & E deficiency, so they prescribed some vitamins for him.

The thing with being listed, you HAVE to do what ever the Transplant Hospital/team wants you to do. They wanted to schedule the ERCP yesterday, but I told them I would rather wait until they spoke with his doctor since he knew Big Bird's case and has been caring for him for the last decade. This hospital was suppose to be highly recommended, but I will tell you their hep doctors haven't been the greatest doctors I have ever encountered. They are suppose to be the "liver specialist" and yet, whenever we meet with them, we always feel hopeless, and that he will truly be lucky to get a transplant. We really leave there feeling like there is no hope, that transplant is a possibility but to not get our hopes up. We leave there feeling like a statistic, a number. A means of money making, because those doctors certainly lack some sort of human connection, a means of reassuring a patient and their loved ones that all is not lost. This particular doctor yesterday went as far as to tell us that transplant was not a "cure" for PSC, but rather a short reprieve, that more than likely in about 10 years he would likely experience recurrence and again be a transplant candidate. How about that loveliness, we haven't even got through this round, and we feel like we are being told to prepare for it again in 10 years.

After visits like this, you wonder (aside from the fact that he physically just can't handle it) why isn't he just going out and enjoying life to the fullest? Never mind his doctor has basically banned him from open water, no lakes, no rivers, no oceans-too many uncontrolled germs. But as far as the transplant hospital is concerned he is "fine". I beg to differ, I see him almost fall from dizzy spells. I see him want to crawl up in a fetal position almost in tears cause he is scared to death of dying, I see the fear in his eyes when his temp crawls up to a fever, then relief, cause it doesn't quite hit 100. I see the fear in his eyes every time he grasps his side, because the liver pains and back pains have increased. This is what I live with everyday, and then have to be sucker punched by a doctor who doesn't have the compassion to listen to a patient when he tells him, I don't care what my MELD is, I know my body and something isn't right, then be told OK, we will see you in 3 months.

This is our world, our frustrations, for whatever reason, the path we were set on. I don't understand it, but I have to believe Heavenly Father has put us on this path for a reason.....

elephant man

2007-05-23T16:00:00.000-05:00

Elephant Man has made an appearance.

Well not really, but boy do I like to tease Big Bird! New Symptom-swollen ankles and legs, with the added finesse of pain and tightness. Good times! LOL. Suddenly Tuesday afternoon, Big Birds ankles and legs swelled up. Now this wouldn't be so noticeable if he were not such a bean pole. But none the less it is. Put a call into the doctor, they said to keep the feet elevated, and he did all night long.

This afternoon took Big Bird in for an ultrasound on his legs-they wanted to rule out blood clots-and they did. NO blood clots found (thank goodness). But the mystery remains why all of the sudden? He does not have high blood pressure, his heart is in tip top shape-so we chalk it up to the stinky liver disease-PSC. It is after all a side affect.

He also had his routine blood work done last Friday (May 25, 2007) they got the blood work back and his MELD score jumped to 28 since his last blood draw April 30, 2007. So they want another draw, we are waiting to hear from the transplant hospital for orders. After they do this, and his MELD is the same, he will be bumped up the list to #3 in his blood class. WOW now that is a scary thought!

LISTED

2007-05-01T16:10:00.000-05:00

Listed!!!

After years of waiting and wishing. It is finally here! Big Bird is LISTED!!!!! He has a current MELD score of 20. He is 6th on the waiting list for his blood type (A+).

It is bitter sweet. You wait and wait for this, then it comes, you take a deep breathe, and then WAIT. So many people die waiting for an organ transplant, but so many people live because they get the gift of life. Bitter Sweet!

So, for my non humorous post today, I encourage everyone to consider being an organ donor. You never know who or how many lives you could save, by simply donating your organs. Talk to your family about-pray about it. For more information on organ donating you can visit http://www.organdonor.gov/.

One more test

2007-04-25T15:59:00.000-05:00

The Last of the evaluation process!!!!!

OK, so on Monday April 30, Big Bird gets to go in for an MRCP & blood work. This is the last of his evaluation tests before listing. Woo Hoo! We are getting closer. He has been feeling a little wonky this week. Side pains, chills & hot flashes (if I didn't know better I would scream menopause-hehehe). Just something else to watch. Found out that his RX plan doesn't want to pay for URSO-to expensive go figure. Talked to his doc about that, so he is gonna try and go without for a couple weeks and see how he reacts, if not guess we will begin the pleading process again from Axacan for assistance.

The lactulose doesn't seem to be doing anything for the loopiness (or if you want the medical terminology-encephalopathy). The Tourette's (no he doesn't really have Tourerret's just something we can say that explains the bizarre things that spew from his mouth), and the "picking" is still there. So he is upping that to 4x a day.

But on a fun note, for us gamers in the house....Yes all three of us, Big Bird, cousin & me all play the addictive game of World of Warcraft. Silly we know, but it is our "family time". For those who play will know, Darkmoon Faire is coming to town this weekend, http://entertainment.upperdeck.com/wow/en/ , so we will be exploring the Card game version of WOW. They also have RL quests, so we will be able to take some goofy pics around town. And since we are guild leaders we think we need to participate in this silliness. You can learn about our guild at www.kktwow.net, Knights of Kirin Tor, we play on the Farstriders server.

Other than that all seems to be well-considering in our household. I will be needing to get in touch with our Bishop from Church so that we have some contacts in San Antonio-I have been putting that off until we were closer to having him listed. We will have to have someone that can come and give Blessings when he is in the hospital in San Antonio.

Laugh

2007-04-06T10:12:00.000-05:00

Laugh!!!!!
Laugh out loud!

So, we had a comment today (Thanks Buck!) I just had to laugh. I totally forgot to mention the pee test.

This was SOOOOOO gross! First you have to pee in a wonderful orange jug for a full 24 hours. They tell you to store your pee in the fridge or on ice. Could someone please tell me who would be sick enough to store your pee in the fridge in which you keep your food & drinks. That is gross.

We made the Big Bird keep his on ice in an ice chest, kept in the bathtub with the curtain drawn. It just grosses you out to think about it being there.

But let me remind you that you have to do the TWICE. One week apart. They want to make sure your kidneys are functioning. Nothing like coke colored pee to warm the gag reflux!

This is why you must always remember to LAUGH!!!!! We have a twisted sense of humor in our house, but you have to when you are going through something like this. You have to remember to laugh, cause sometimes it just gets to be too much. Faith, love & laughter are the things you have to hold onto.

One week of evals...

2007-04-05T15:49:00.000-05:00

A week of evaluations entails.....

If you have every been sick enough to garner a week worth of intensive testing to see if you qualify to be put on the UNOS list for an ogran-then you know what that is like. If you are not, here is what a week worths of testing is schedule is like

Tuesday, March 27, 2007
8:00AM Dental Consult-Please report to the hospital 3o minutes early. Also, you are given a perscription for 4 horse pills to prevent infection for the 2 hours of x-rays and poking and prodding they will do to clear your mouth for any possible infections that may be looming.

1:00PM, CT Scan-please starve yourself! Nothing to eat or drink for 4 hours prior to the CT Scan.

2:30PM Clinic Appointment-Here we met with a less than personable Hep doc. He just didn't give me the warm fuzzies. One would think if you are there under going testing, you would think the doc would acknowledge you are sick-but instead leaves you feeling he would rather treat the disease (as if we haven't been doing that for the last 6 years).

4:40PM-FINALLY We get to go home (well hotel anyways) Exhausting and we are only on Day 1!

Wednesday, March 28, 2007.

7:00AM, EKG & ECHO-Have to be there 30 mins early (yeah cause 7 am isn't early enough-heck the sun isnt' even shinning yet!)
8:15AM Stress Test-yeah so they pumped him full of chemicals to stress his heart. Left a most lovely taste of metallic in his mouth. This test lasted until noon.

Mom & I sneak away and let him sleep for a couple hours. His lack of naps is not a happy scenario.

Thursday, March 29, 2007

9:15AM-Admissions-I still don't get what the purpose of this was, we got there showed them the letter, and they told us to just wait.

10:00AM-PFT's-His lungs are healthy-unfortunately he appears to not be using the full function of his lungs due to the enlargement of his liver. This is common in Liver Disease. Which does help explain the shortness of breath and dizziness.

11:00AM-Chest X-Ray-well they actually went ahead and did that when they did the CT Scan.
Woo Hoo we are done a wee bit early. Too bad it is raining cats & dogs so that really just doesn't leave us many options. We went and had lunch-then headed back to the hotel. Where we all napped. I really can't believe how exhausting all this is on everyone!

Friday, March 30, 2007

9:45AM-Cardiologist-Clear bill of health! His heart is healthy & normal. He has free cardio clearance for surgery-wooohooo

1:00PM-Nurse Clinic Appointment-well since they failed to administer the TB test, we cancelled this appt.

2:30PM-Social Work-We met with a social worker at the hospital. She talked to us about transplant patients. What to expect. About after care and medications that patients are on etc. She was impressed by his support-and was happy to see us there and him through this week.

His nurse coordinator-which is a super sweet lady-hopes to have the rest of his files & tests together to present his case to the transplant board this month.

If all goes well, by end of April he should be listed. They are putting him with a MELD score of 19.

We made it San Antonio

2007-02-10T23:05:00.000-06:00

We made it to San Antonio........

We met with the Transplant Surgeon yesterday. They are going to evaluate Big Bird for Transplant. His nurse coordinater will be calling us within the next couple weeks to schedule the evaluation. This will take 3-4 days. Out-patient basis. He has a perliminary MELD score of 21 (based on blood work from December), but after being in the hospital and pumped full of IV antibiotics, his MELD dropped to an 18 based on the blood work done Friday morning-but they do acknowledge that the score lowered because of the antibiotics-fun stuff.....After all the evals and all is done, we are looking at possible listing for transplant in April or May....

The surgeon was very optimistic-which was assuring for both Big Bird and my mother. But there is a chance he could get really sick while waiting. Ah fun....But we will keep our fingers crossed, and keep the prayers going.

Just wanted to post an update that the appointment went well and we are on our way to what we have waited years for!!!!!!!

Home

2007-02-08T21:43:00.000-06:00

HOME!!!!!!

Big Bird was released from the hospital around 7pm tonight. He is home, resting and preparing. We meet with the Transplant Surgeon tomorrow morning for a consult. I will post when we get home......

Hospital visit again....

2007-02-07T20:35:00.000-06:00

Hospital visit again..........

Big Bird is in the hospital. He started with low grade fevers last night. So after dealing with that off and on for several hours last night we headed to the ER at 11:30pm, I left the ER at 6:45am. They admitted him. There is an infection, just not sure what and where, as his blood tests are "normal" for him. Just the fluctuating temps. Frustrating for him, but for us as well......

The doctor will be back again to check on him. He was experiencing some tenderness in the right quadrant area-something new, but not necessarily anything...we hope!!!! No signs of ascites-good!!!

Will post more when we know more. They are pumping him with IV antibiotics and fluids. And of course his normal doc is out of town. And again-he gets sick on Tuesday-what is with Tuesday?????????

Medicare Effective!

2007-02-05T17:08:00.000-06:00

Well we are officially into Medicare. However, the joys of working with State Aid programs SUCKS. We filled out ALL the appropriate paperwork. We sent in ALL the appropriate paper work on time. And yet the benefits are not there (mind you we got a letter telling him what he was approved of, and when the benefits will be available). Texas Health & Human Servics "doesn't know why benefits have not been released". Maybe because they don't know how to never mind, that wouldn't be nice to say......I am trying very hard this year to not say mean things....it is very hard......

We are anticipating the consult with the Transplant Hospital. Nerves are very frayed and on high alert. So much about Big Birds future will depend on this visit.....fun stuff!

Will post when we have details regarding the appointment.....

Good news

2007-01-31T16:15:00.000-06:00

Well, yesterday morning Big Bird's doctor called, the antibiotics are working Yippeeeeee!!! His bili was down from 25.2 on Tuesday (1/23) to 16! Good news. His doctor also said that he could post pone the ERCP that was scheduled for tomorrow until after Transplant Evaluation-so of course he did! Hopefully the Transplant hospital will call soon. Medicare if effective tomorrow. HOORAY!!!! This is so exciting. Some anxiety of him getting sick will be removed-because at least now he can get the medical attention he needs without the added stress of money being the issue.

There is an organization that is focused on bring research and attention to PSC-the liver disease which affects Big Bird, PSCPartners Seeking a Cure, they are sponsoring a virtual walk, you can register at www.pscpartners.org. It is $25.00 to register, they send you a T-shirt, a pen, envelope you collect signatures and monies-then send it back to them, they will display it at the conference in April. We won't be there, but I think it is still a worth while cause and one that actually goes directly to a disease that gets little funding as it is! So if you can-help out and register!

I will post as soon as we have transplant eval dates!

Medicare we await thee

2007-01-29T11:52:00.000-06:00

On Thursday, February 1, 2007-Medicare will be EFFECTIVE!!!!!!!! You have no idea what a relief this is!

On Thursday, February 1, 2007, Big Bird will be going in for a procedure called an ERCP. They are hoping to dilate his bile ducts to drain some of the excess bile from his system. Please offer prayers and good vibes to us as we deal with this. This isn't the first ERCP by any means, but complications can arise as with any medical procedure and general anesthesia.

On Thursday, February 1, 2007 the Transplant hospital will be able to begin verifying coverage. We should have an appointment within 2 weeks for evaluation.

As of today we are 6 days fever free. Yippee......As of today we are 3 days from health coverage!

Fevers

2007-01-24T11:31:00.000-06:00

So, Big Bird woke up at 3AM with a fever at 6am it was 100.01, at 6:30am is was 100.04, at 6:35am we take alieve, got the fever down (wooohooo). Called his doctors office, they had him in for STAT blood work......

We got the blood work results back (of course they came back when I wasn't home so I didn't get them all) but my brother total bili came back at 25. He has been feeling "fine". A little anti-social but fine, considering-he has been stressed with all this waiting and anticipation that Medicare takes effect next week.

Well his doctor is not real thrilled with the bili count-it is the highest it has ever been. He is wanting to do an ERCP (knowing that the last ERCP done in Feb. 2005 he told us that stenting was no longer an option do to scarring). I just don't know what to think of the latest bili lvl. I really wish I had the other blood results-when I talked to the nurse this morning, she didn't have his chart just orders to get an ERCP schedule that his doc has his chart....

Do I worry, I don't know I ARGGGGGGGGGG